11 replies to this topic

[LadyPilot]

I hope no-one minds that my first post is a bit heavy

When I was discharged from Lodge Moor into the real world, no-one ever mentioned anything about AD or how serious it could be.
Eight years later a fellow SCI gave me a bit of paper with the basics of AD on it and I took note. Lucky I did because the first time it happened I had tipped a cup of very hot black coffee over my thigh. I managed to get to my GP (nearer than Hosp) when I realised that my leg had blistered badly. Anyway I'd been OK until the nurse started to put cream on it then I went into AD. NO-ONE knew what was happening except me. Thankfully the community paramedic and attending Doctor listened to me after my BP had rocketed to 230/150mmhg. and gave me some GTN spray. Unfortunatley the burns were 3rd degree and took nine weeks to heal.

My second AD "attack" happened in Jan 2006 when I tore the ligaments and broke a bit of bone in my ankle. I had to wear a brace on it during the day and take it off at night. The first day I tried to put the brace back on I started to get the tell tale thumping headache. I stopped and the AD went on its own but it scared me and I then asked my GP if I could be prescribed the GTN spray in case it happened again. He agreed.

Now to why, in my case, I was glad I was prepared to cope with AD.
Ten days ago at 22.30hrs I was "walking" my dog before going to bed. At night she is on an extending lead because she has a habit of chasing hedgehogs in the garden. ( One of my interests
I got to the back door and without warning she took off I held onto the right wheel but she was too heavy and strong and I was pulled out of the chair over a concrete step and landed hard on the ground. I had put my arm out to break my fall and it was my collar bone which "gave" along with dislocating my hip.
In total darkness and it had started raining, I found my phone and called an ambulance.
I was unable to sit up and suddenly the base of my skull started to pound. I was really scared but managed to find the GTN spray I always carry and stop the AD before it got serious. Help arrived and Im OK now.

So the reason for shareing my story is that you never know when or if you are going to get AD and it's better to carry a GTN spray you may never use than regret you never had one. It's also an alarming fact that there are many frontline medical personnel who have never heard of AD let alone how to treat it.
I'm glad I knew. It wont stop me having accidents but at least I know what the pounding headache means.
I have just printed off the brilliant little warning card from this website to carry with me in case I am unable to react to AD and someone else needs to know.


PS What a great website this is!!!

[debs]

Where on the site is the warning card? I have one but it's very battered.

[Apparelyzed]

Here you go.

And it's as a downloadable pdf file below as well.

Simon

Attached Files

•  autonomic_dysreflexia_card.pdf   71.17K   92 downloads

[lune14]

 LadyPilot, on Jun 12 2006, 04:35 PM, said:

So the reason for shareing my story is that you never know when or if you are going to get AD and it's better to carry a GTN spray you may never use than regret you never had one. It's also an alarming fact that there are many frontline medical personnel who have never heard of AD let alone how to treat it.
I'm glad I knew. It wont stop me having accidents but at least I know what the pounding headache means.
I have just printed off the brilliant little warning card from this website to carry with me in case I am unable to react to AD and someone else needs to know.


PS What a great website this is!!!

What exactly is this spray and what does it do when applied? I have never heard of it before but I am aware of AD. Thank you for sharing your personal experiences with the condition.

PS.. Simon thanks for the download pdf. None of my friends have one either so I'm sure we're all grateful you've provided such info here.

[russ1]

Diana - AD is a condition that afects those with an injury of T6 or higher so you should be ok without the spray

[lune14]

 russ1, on Jun 17 2006, 01:08 PM, said:

Diana - AD is a condition that afects those with an injury of T6 or higher so you should be ok without the spray

Thanks Russ,
Actually I know what the condition is I was just wondering what the spray does (more chemically speaking).

[Apparelyzed]

GTN is a nitrate, one of a group of medicines that ‘relax’ and widen the coronary arteries, increasing the flow of blood to the heart muscle. GTN is a ‘short-acting’ nitrate, which means that it acts quickly but its effects do not last as long as other, ‘long-acting’ nitrates.

GTN can be taken as a tablet that dissolves under your tongue and the pain is usually relieved in two to three minutes. GTN is also available in skin patches (transdermal patches) and as a spray (again for under your tongue), and all forms are available from a pharmacy without prescription.

When GTN is used against Autonomic Dysreflexia, it has the effect of dilating the blood vessels below the injury level, therefore allowing blood to flow back throughout the body, thus reducing blood pressure.

The reason you get a headache with Autonomic Dysreflexia, is because the blood vessels below your injury vaso constrict, pushing all the blood up above your injury level. This is because the nerves reponsible for dilating blood vessles (Sympathetic nervous system) are contained within the spinal cord, whereas the nerves reponsible for vaso constriction (Parasympathetic nervous system), are outside the spinal cord.

Simon.

[lune14]

Thank you for the detailed response Simon, it was exactly what I was wondering. Of course I could have taken my lazy fingers to google it but ... (ok now I'm embarassed at my laziness)

& thank you again!

~ Diana

[Izziwhizzi]

Good to hear what sets your AD off. I have symptoms of it far more often than I would like, but have only had to use GTN once. I find that dehydration always makes AD come on more easily. e.g if I've had a curry I always get 'indian poisoning' type dehydration and so need to down a couple of pints of water before I go to bed or else I know they will be no hanky panky that night! A full bladder or sex are my major AD triggers. Funny thing is though the more sex I have the less AD I get .... obvious conclusion!

Edited by Izziwhizzi, 20 June 2006 - 12:02 PM.

[laura]

thank you for sharing LadyPilot,pays to be safe. i hope that after your recent fall you aren't feeling too awful and that you improve soon. gentle hugs.

Simon thankyou for the card-downloaded it and printed off. in my bag as i type! :-)

thanks for the info on GTN i've been given the tablet a few times now and have been trying to get some to have at home/with me at all times, but its been like getting blood out of a stone. now its on my shopping list! vital bit of equipment!

thanks all

[LadyPilot]

 laura, on Jun 20 2006, 11:47 PM, said:

thank you for sharing LadyPilot,pays to be safe. i hope that after your recent fall you aren't feeling too awful and that you improve soon. gentle hugs.

Aw shucks thanks for caring. Its 3 weeks ago now and it's much better thank you. Thank goodness for voltarol painkillers.

[sreneet]

I have had the same problem trying to get my rehab Dr. to fill me a script for AD. My past rehab Dr. prescribed Procardia, told me to take one if AD wasn't releived after checking obvious signs (bowel, full bladder, ingrown toenail, pressure sore, sex etc). After that take one and head to ER. I don't know why it is so hard to get a prescription when we know our bodies even better than most Dr.'s do. I can't afford an ER bill everytime I get AD that might last a little longer than other times, and I don't know if I might suffer a stroke before it decides to go away. The times I have actually gone to the ER most of the Dr.'s didn't even know what AD was, it can really be frustrating.

Thanks,
Renee

Quote

thank you for sharing LadyPilot,pays to be safe. i hope that after your recent fall you aren't feeling too awful and that you improve soon. gentle hugs.

Simon thankyou for the card-downloaded it and printed off. in my bag as i type! :-)

thanks for the info on GTN i've been given the tablet a few times now and have been trying to get some to have at home/with me at all times, but its been like getting blood out of a stone. now its on my shopping list! vital bit of equipment!

thanks all